Caregiver Perspective: A Day in the Life of the Bronchiectasis Patient

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Dr. Basavaraj:
Hi my name is Ashwin Basavaraj, Section Chief of Pulmonary Critical Care and Sleep Medicine at Bellevue Hospital Center in New York City, and Associate Director of our Bronchiectasis and NTM Program at NYU Langone Health. Today we're going to be talking about a Patient Caregiver Testimonial: A Day in the Life of the Bronchiectasis Patient. With me today is Mrs. K. Mrs. K, thank you so much for joining me today.

Mrs. K:
Nice seeing you. Thank you.

Dr. Basavaraj: 
Mrs. K is a caregiver of her husband, who is diagnosed with bronchiectasis. Oftentimes, we talk to the patient themselves to understand what it's like to live with bronchiectasis. But this is unique because we don't get a chance to talk about the caregivers perspective. So Mrs. K, you're going to add a lot of valuable information today. And we're hoping to really touch on both the patient's life and the caregiver’s life and what it's really like in these patients with bronchiectasis.

So Mrs. K, we can talk about first, what was the diagnosis that your husband was given from a pulmonary standpoint?

Mrs. K:
His diagnosis was delayed mainly because, first of all, he was heavy smoker. And then he goes to the primary physician, several years, like since he was 20s. He goes regularly and then he get coughs and bronchitis every winter, he gets treated by erythromycin, sometimes Vibramycin. He gets the antibiotics and he feels better. But progressively, I was feeling that he was having wheezing. And I said to him, ‘You look like a you're developing emphysema or something.’ But nobody paid attention, and they ignored my comment. And he continued on smoking heavily. He thought that it doesn't hurt anybody. That was my problem.

And then he had spinal surgery. First time was uneventful, but his pain came back. When he went back to the orthopedic surgeon, he said that he has a degenerative osteoarthritis in his spine. Eventually he cannot walk, very disappointment in his life. And he determined that he's going to do something about it. So he went for - he researched actually. And then he found the doctor at the Hospital for Special Surgery. And they explained to me he needed two steps for spinal surgery. One is putting the about 7 or 8-inch rod in his spine, and that will stabilize spine. And then after 6 months, he will have a second surgery, they will try to correct his scoliosis also at that time, and he should be able to walk then. So they tried to make him to walk and work at same time as long as possible. That was his goal.

And then his coughing and wheezing had appeared to be no problem until last surgery, which is third surgery. By then, he stopped smoking. But he was starting to having coughing and expectorating, phlegm. And I told him over and over he should assist specialist but he has very attachment with his primary physician. He didn't want to be abandoning or disregarding his recommendation, which he never recommend to see any lung specialist. After a couple of years, finally he agreed because when I saw his spitting out expectorating into the like a toilet bowl like thick, yellowish-greenish phlegm. I saw it and I said to my daughter, I reported him and then she called his primary physician directly, and he ordered the CAT scan of a chest by then. Meanwhile, he went through a lot of like antibiotics, and he got a little better, but he's still persistently coughing, coughing, coughing. And sometimes he walks like 10 steps and he stops. I thought - at first, I thought that he was in pain because of spinal surgery, but he was actually catching the breath. He finally went to have the CAT scan. He went to a pulmonologist at Summit Health and the CAT scan showed that he has emphysema with bronchiectasis. 

Dr. Basavaraj: 
So it sounds like he was diagnosed earlier with emphysema and COPD, which have chronic symptoms. And later on, he was diagnosed with bronchiectasis. So that diagnosis of bronchiectasis may have been contributing to a lot of the symptoms that he was having. And this is something that we commonly see in patients with bronchiectasis, we see a delay in diagnosis, a potential misdiagnosis, although in your husband's case, he was diagnosed with emphysema, but oftentimes, patients may be misdiagnosed with asthma, COPD, when in fact, they have underlying bronchiectasis contributing to their symptoms. So it's important to identify the bronchiectasis early so they can be managed appropriately.

You also mentioned spinal issues and scoliosis. This is something that we oftentimes see in patients with bronchiectasis and nontuberculous mycobacteria, an infection associated with bronchiectasis. They can have different body morphotypes that may be associated with bronchiectasis. So what you're describing is very commonly seen in patients with bronchiectasis. So thank you so much for joining me today.

Mrs. K:
Thank you, sir. Have a good day.

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